Biography

Prof. Jane Kaye DPhil, LLB, Grad Dip Leg, BA is the Director of the Centre for Law, Health and Emerging Technologies (HeLEX) in the Faculty of Law at the University of Oxford and also leads the Centre for Health, Law and Emerging Technologies at Melbourne Law School, University of Melbourne, Australia, where she has a fractional appointment.  She obtained her degrees from the Australian National University (BA); University of Melbourne (LLB); and University of Oxford (DPhil). She was admitted to practice as a solicitor/barrister in 1997. She is on a number of international expert committees and scientific advisory boards and has been on the  Nuffield Council Bioethics Working Group on Biodata and Rapporteur for the EC Expert Report,  Biobanks for Europe - A Challenge for Governance, June 2012.  She is also on the editorial boards of Law, Innovation and Technology, the Journal of Law, Information and Science, Genomic Medicine, New Genetics & Society and Life Sciences, Society and Policy.  Her team are leading on the Dynamic Consent project. Her research focuses on the relationships between law, ethics and the emerging technologies in health. The main focus of her research is on genomics with an emphasis on biobanks, privacy, data-sharing frameworks, global governance and translational research. Her full profile is available on the HeLEX website.

Publications

Recent additions

  • Teare, H. J. A. , Prictor, M., J Kaye and Kaye, J. , 'Reflections on dynamic consent in biomedical research: the story so far.' (2020) European journal of Human Genetics
    DOI: 10.1038/s41431-020-00771-z
    Dynamic consent (DC) was originally developed in response to challenges to the informed consent process presented by participants agreeing to ‘future research’ in biobanking. In the past 12 years, it has been trialled in a number of different projects, and examined as a new approach for consent and to support patient engagement over time. There have been significant societal shifts during this time, namely in our reliance on digital tools and the use of social media, as well as a greater appreciation of the integral role of patients in biomedical research. This paper reflects on the development of DC to understand its importance in an age where digital health is becoming the norm and patients require greater oversight and control of how their data may be used in a range of settings. As well as looking back, it looks forwards to consider how DC could be further utilised to enhance the patient experience and address some of the inequalities caused by the digital divide in society.

Journal Article (60)

Prictor, M., Lewis M.A., Newson, A. J. and J Kaye, 'Dynamic Consent: An Evaluation and Reporting Framework' (2020) Journal of Empirical Research on Human Research Ethics
DOI: 10.1177/1556264619887073
Dynamic consent (DC) is an approach to consent that enables people, through an interactive digital interface, to make granular decisions about their ongoing participation. This approach has been explored within biomedical research, in fields such as biobanking and genomics, where ongoing contact is required with participants. It is posited that DC can enhance decisional autonomy and improve researcher–participant communication. Currently, there is a lack of evidence about the measurable effects of DC-based tools. This article outlines a framework for DC evaluation and reporting. The article draws upon the evidence for enhanced modes of informed consent for research as the basis for a logic model. It outlines how future evaluations of DC should be designed to maximize their quality, replicability, and relevance based on this framework. Finally, the article considers best-practice for reporting studies that assess DC, to enable future research and implementation to build upon the emerging evidence base.
Teare, H. J. A. , Prictor, M., J Kaye and Kaye, J. , 'Reflections on dynamic consent in biomedical research: the story so far.' (2020) European journal of Human Genetics
DOI: 10.1038/s41431-020-00771-z
Dynamic consent (DC) was originally developed in response to challenges to the informed consent process presented by participants agreeing to ‘future research’ in biobanking. In the past 12 years, it has been trialled in a number of different projects, and examined as a new approach for consent and to support patient engagement over time. There have been significant societal shifts during this time, namely in our reliance on digital tools and the use of social media, as well as a greater appreciation of the integral role of patients in biomedical research. This paper reflects on the development of DC to understand its importance in an age where digital health is becoming the norm and patients require greater oversight and control of how their data may be used in a range of settings. As well as looking back, it looks forwards to consider how DC could be further utilised to enhance the patient experience and address some of the inequalities caused by the digital divide in society.
J Bell, S E Wallace, M Mourby and J Kaye, 'Lawful disclosure of administrative data for research purposes in the UK' (2019) 2 Journal of Data Protection & Privacy
NAA Giesbertz, K Melham, J Kaye and J Kaye, 'Personalized assent for pediatric biobanks' (2017) 12 BMC Medical Ethics 59
J Kaye, 'From single biobanks to international networks: Developing e-governance' (2011) Human Genetics
L Curren, J Kaye, H Gowans and P Boddington, 'Identifiability, Genomics and UK Data Protection Law' (2010) 17 Eurpean Journal of Health Law 329
J Kaye, 'Mapping the regulatory space for genetic databases and biobanks in England and Wales' (2008) Medical Law International
J Kaye, 'Genetic research on the UK population - do new principles need to be developed?' (2001) Trends in Biotechnology
J Kaye, 'Safeguards for research using large scale DNA collections' (2000) British Medical Journal

Report (1)

Chapter (3)

J Kaye, J Bell and M Prictor, 'Trends and challenges in biobanking, tensions and and traumas in health law' in I Freckelton and K Petersen (eds), Tensions and Traumas in Health Law (The Federation Press 2017)
N Hawkins, N Kanellopoulou, J Kaye and J Kaye and others, 'Ownership of biomedical information in biobanks' in Pascuzzi G | Izzo U | Mailotti M. (ed), Comparative Issues in the Governance of Research Biobanks (Springer 2013)
DOI: 10.1007/978-3-642-33116-9-5
J Kaye, 'Biobanking networks - What are the governance challenges?' in (ed), Principles and practice in biobank governance (Stanger 2009)

Other (3)

C Johnston, J Kaye and J Bell, 'Who owns your DNA?' (2017) Pursuit (Melbourne University) Legal Affairs
J Kaye, 'The use of biological sample collections and personal medical information in human genetics reasearch: Issue for social science research and public policy' (1999) Wellcome Trust

Book (2)

J Kaye, Governing biobanks (Hart 2012)
J Kaye, Principles and practice in biobank governance (Stanger 2009)

Research projects